February 15th, 2011   3 comments

Charlotte again was fever-free today.  She played all day happily.  The four of us took a walk this morning around the block and Charlotte loved it.  The wind was a little cold, but she still had a good time.

Grandma E came over while Charlotte napped so Amy and I could go to the bone marrow transplant consent meetings this afternoon.  We heard an awful lot of information we already knew, but also some stuff we didn’t.  We now know that for a period of time after the transplant, they would like us to have Charlotte in an “isolation” state.  No crowds, no sick children, no busy stores or other places where she might catch something.  We also found out that during that time, she won’t be allowed any of her favorite berries.  Strawberries, blueberries and raspberries and grapes are her very favorite, and since they cannot be scrubbed clean they pose a greater threat to her getting sick from them.  She won’t be able to go swimming or play in sand or dirt or jump into piles of leaves for this time.  She might have to wear a mask while outside if it is windy or if grass is being cut.  She will still need to have immuno-suppressant medications this whole time.  Once the various tests show that her new immune system is developing nicely and her numbers continue to stay at a healthy level, the “isolation” state could end.  This period usually lasts until 6-12 months after the transplant.

We asked the doctor why Charlotte was asked to have a bone marrow transplant versus a peripheral blood stem cell transplant or use stem cells from cord blood.  He said that with AML,  the survival rate for bone marrow transplants vs peripheral blood stem cell transplants is higher.  He also mentioned that using a cord blood donor is a one time use thing.  If Charlotte does relapse, we might have other treatment options from the original donor.  We could use a leukocyte transfusion from the donor and that could help fight the leukemia.  The Dr knows of at least one person where this process saved his life.  Also we could use peripheral stem cells from the original donor to try another “mini” transplant if the cancer comes back.  If we used cord blood, there would be no options for getting anything further from the original donor.

All things considered, it is still a very risky procedure.  There is still a 20-30% chance that she might not even make it through the transplant because of infections, engraftment failure, or serious side effects.  There is still a 20% chance that the leukemia could come back, even after a successful transplant.  None of these things make us feel good.  None of these numbers give us any peace that we are making the right decision, especially when she is very healthy and very happy and very leukemia free at this point in her life.  It kills both of us inside to think that once she gets nice and healthy and used to life back at home,  we need to subject her to this.  But the rarity of her AML subtype, and more importantly-the complex cytogenetics of her leukemia cells, lead all of the doctors involved to believe that she is at a huge risk of relapse with just chemotherapy.

But there is good news in this whole thing.  He said that all of her pre-transplant evaluations looked good.  They gave him no reason to think that she would be in any more danger of any of the more rare, more serious side effects.  The donor is a perfect HLA-type match with a “better” classification of NK cells.  The donor is a woman, has never been pregnant, and is the same blood type.  All of these are usually indications of a slightly lesser chance of the more serious acute graft vs host disease.  Charlotte is in first remission and has not had years of chemo doing damage to her organs.  She is also still growing.  And all the new tissue her body produces as she gets bigger and her organs mature, has not been subjected to chemotherapy.  So hopefully, her body will actually heal itself as she grows.  She has already lived the transplant life so to speak with her first four rounds.  She has had no infections while her numbers were down, and she has rebounded nicely and stayed healthy between rounds.  She is also getting a good break at home now, keeping her numbers up and her body is rebuilding its strength.  Dr DeSantes still believes that she has a better chance of this being her cure than not.  I wish her survival odds were somewhere in the 99.99994% range, but we will take anything in her favor right now.

So we are trying to concentrate on the good points of the conversation and we hope we don’t have to worry about some of the bad ones.  We believe this is the right thing for her, and we have faith in the staff at AFCH.  We know the Lord has a plan for her and that is why He is allowing us to love her more and more every day.

Posted February 15, 2011 by L. Elske in Uncategorized

3 responses to “February 15th, 2011

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  1. Wow. What a lot to think about and sort through. You write about it so clear and well Lon, but I can only imagine how messy all this information feels to sort through. We are continuing to pray for all of you.

  2. I wasn’t able to check Charlotte’s blog for a few days, so I just now saw the wonderful news that she is in total remission!! So many more things to think about and decisions to make with this BMT coming up, but you have to know that you’re doing the right thing. The doctor’s and specialists are all so positive for Charlotte’s outcome, so you just have to trust their wisdom in treating her. We continue to pray for Charlotte’s complete and total remission, and always in out thoughts … “She’s done great…she’s doing great…the odds are in her favor…this will be Charlotte’s cure!!!” Love to all of you…
    Aunt Cyndee and Uncle Earl

  3. Wow! What a feeling of turmoil for you. No one can see the future. You have to trust that you are making the right decision, given the information you have and the expertise available to you. And then give the rest to prayer.

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